Thursday, April 30, 2009

Posting on behalf of Jolene, her handphone has unfortunately been stolen and so those who has her main line, if you have her second line number please sms her from there.

Else, you can also email to us.

Have a few moments to pray for Charmaine too. Some quick updates:- Charmaine is getting better day by day, very chirpy and back to her endless energy self. Thanks for all. The "Day10" low immunity issue has not reached us despite day 12-14 right now i cant remember. =X - She will be in the OT for a short while next Tuesday for her bone marrow test.Please pray for her for it to be a short, smooth, and painless one.

Sunday, April 26, 2009

Dear all,

This post was supposed to come earlier but I didn't have the time to update till now.

Charmaine has been quite sickly after she was discharged. She kept suffering from nausea and vomited quite a few times. She was weak and lethargic most of the time, quite different from how she looked in the recent photos. These are the side effects of chemo.

Jase was having fluctuating high fever since Wednesday. His temperature reached as high as 39.5. Doc said it was the flu.

Cynthia had succumbed to sickness as well. She was really weak on Friday and vomited too. Doc said she caught the flu from Jase. She was a lot better on Friday night but it requires some time to fully recover from flu.

I knew her appointment with Dr. today, so i had pre-empt my office for urgent leave."See u in NUH 8th floor"

When I was there, Cynthia looked worse than yday, and she is trying to avoid contact with Charmaine and other kids for fear she might pass her virus to them. She seemed to have gotten it from Jase, who has high fever for 2 days of 39ish. She couldnt seperate them on the bed. So the virus just passed from 1 to another.

Dr consultation was that Charmine need not be warded, but counting the days, it seemed that these few days, will be her low imune day and the first week of May will be the bone marrow test. There were some qns that Cynthia asked which i didnt catch cos i was looking (playing) with Charmaine.

Some key points:- 2 to 3 out of 20 children were cured- 3F8 couldnt be made available to her despite Dr plea.- Dr encourage (shld $ not an issue) to go to New York for her treatment. But at least USD70K to be deposited with the bank (like a form of guarantee?)- 3rd chemo has a substance that will cause Charmaine to be nausea that why she been vomitting so much after that- ch14.18 that we checked online, Dr did not hear of it but mentioned it could be other hospitals treatment. So 3F8 is still our best bet for now. 100% movine (mice) though.

Cynthia health been going downhill. She vomitted while heading back on a cab. Basiaclly is zero action but the kids keep asking for her. She seen the doctor took her medicine. But not good.

New maid is in, but not yet adjusted.

~~~~~~~~~~

Dear kind souls who have been leaving comments,

Just to let all of you know we've been reading all your comments.

Even though Cynthia doesn't leave replies here, you can rest assured that she reads every single one of the comments and she really appreciates it. =)

Thanx for all your well wishes and words of encouragement.

~~~~~~~~~~

Edited to add: I see nuffnang ads on both the leaderboard and skyscraper! Do help by clicking on them whenever they appear. Thanx!

Monday, April 20, 2009

During her stay in NUH over the past few days, Charmaine had been quite active and cheerful.

However, she has been experiencing more side effects as compared to the first 2 rounds. She vomitted and complained of sore throat and tummy ache which Cynthia suspects could be nausea as this is one of the side effects of chemo.

~*~*~*~*~*~*~*~*~

Happy moments over the weekend

Charmaine had been really active over the weekend.

She kept requesting to come down from the bed to take a walk.

That was troublesome to the adults as we had to push the bar with all the drips. More importantly, we were afraid of the line being jerked out from the port.

Most of the time instead of walking, she would be standing on the bars while being pushed around. It's much safer this way.

It was really cute… the way she got onto the “surf board” and waved goodbye while Charlene pushed her around. Indeed, she looked like she was surfing.

Sometimes, Jase would get onto the “surf board” as well. There was once when he put his hand on the small of Charmaine’s back and said,

“Mei mei still small. I must hold mei mei wait she fall down.”

I didn’t manage to capture that candid shot in time and I could kick myself for it.

~~~~

Had a study session with Jase on Sunday and he was such a darling.

He was supposed to draw himself since it was the theme of "Body". However, he insisted on drawing mei mei and cyn mummy in the box too.

Who could fault him for being out of point when he was being a loving son and brother?

Tuesday, April 14, 2009

For parents of kids suffering from neuroblastoma,

Like to share a few websites I gotten from Char's doc, Dr Aung Lele. According to Dr Aung Lele, these websites are more reliable and I hope it would help other cancer children's parents who are surfing for more information.

1) Monoclonal Antibodies [This drug can increase the chance of survival from the current 20% to 40%. Sadly, this drug is only available in US and Hongkong and they do not sell it as its still in the clinical trial phase. Nonetheless Dr Aung Lele is going to try to write to the doctors in Hongkong to check if they could send some for Charmaine. Really need everyone's prayers to get a positive response from the doctors in HK so that Charmaine is able to get the antibodies to increase her chances. In case some might ask, why dont I fly Charmaine down to HK. Well, the catch is that they only provide for Hongkong citizens as one of the creators of the drug is a Hongkonger. who is now practising in the States.]

2) NK cells [which NUH is currently using under their joint research with St Jude's Children's Hospital]

The above drug is to be used during the bone marrow (stem cell) transplant phase.

For all my friends,

Jolene has written that I suffered another setback recently and it was not appropriate to mention it earlier. Indeed, this may seem like the least of all the setbacks in my life lately. However, it still resulted in another changed circumstance in my life and poses another challenge.

I found out that my maid is pregnant on the 31st March.

When the clinic called me up, I had a real bad hunch but I didnt cry. For some very weird reason, I just didnt cried out in shock. I just kind of went numb. I walked to the room to ask my maid what was the problem and she confessed that she might be pregnant and it was only just once. I was shocked.

I dont blame my maid for what she did but everything just happened in such a bad timing. Just when I needed her most because Char is only comfortable with me and her and she has been with us since Char is 6months old. The kids and all of us see her as part of the family.

The subsequent days went be pretty quickly in a blur... I had to figure out what to do, send her back, get a new maid and everything while trying to fight Char's infection with her in the hospital. I just kept telling myself not to think too much and that I would be able to handle whatever it is as we go along.

The truth is I am more saddened at the fact that once again, someone is going to walk out of my life after so much we have gone through together. I know this is part and parcel of life and that I am not unique; everyone else has to deal with the pain of friends coming in and walking out of our lives every now and than. But I am just human and I still feel the sadness and sense of loss no matter how many times I have already gone through this.

Anyway, thanks to everyone's prayers and blessings, Char managed to fight the infection once again and I had to request for discharge on Monday night because I had to return home to settle my maid's departure on tuesday morning.

And yes, my maid left on 7th Apri and I had to manage and cope with the changed situation myself.

Jase and Charmaine, if you are reading this many many years later, I just want to say sorry for my infrequent outbursts because I am very exhausted.

All these years, I relied much on my helper and we would rotate our roles, while one is doing chores, the other would be playing or watching them. Now, I have to multi-task myself. I am now the mom, the dad, the chef, the cleaner, the playmate, the accountant, the adminstrator and etc...

What makes it extremely stressful is that because of what Char has gone through, she doesnt like to be left alone too much. Hence the kids would always be calling "Mummy, mummy, come". "Mummy mummy come" while I am cooking, washing or cleaning... and it really makes coping with the situation much tougher than before where I could pretty much leave the kids to play and fight among themselves while I do the chores.

Furthermore, with Char being neutropenic (low neutrophils count - low immunity), I also have to wash everything from utensils to toys and floor, a couple of times a day to make sure that things are kept clean and infection is kept to a minimal.

And the marketing and fetching Jase to and from school. Everything sums up to an astronomical amt of task because Char is not allowed out of the house and yet she doesnt like to be left alone at home with my folks. So i cant do the marketing which needs to be done before Char gets admitted tmr and Jase cant go to his classes because the mall is air-conditioned and air-conditioned areas/malls are totally out of bounds for patients undergoing chemo with zero immunity.

Special thanks to Jolene, Charlene and Angela for coming down over the weekend to help me with the urgent marketing. Thank you so much.

Thank you to my folks too. My mom who is ill herself and yet also helping with the washing and folding of clothings everyday. My dad who must be very tired, and yet travelling so far just to get something for Charmaine.

Quite frankly, I feel like the monster myself. Because I would raise my voice to get the kids not to mess up the place where I painstakingly tidied up. And I feel very guilty.

Jase, I know you usually get the brunt of mummy's outburst. Forgive mummy because I love you just as much as I love Charmaine. I am just very lousy at coping with this changed situation, and having to deal with much of it myself.

The biggest worry weighing on my head now is I CANNOT FALL SICK. Not even a simple flu because I am the main caregiver to both Jase and Char, especially Charmaine who has to go hospital weekly and warded almost every alternate week for days. If i fall sick, I wont be able to stay in the hospital with her and it would be disastrous now that I lost my maid, the only other person whom she is comfortable with.

I know I am not the most unfortunate soul in Singapore right now and I know that I am not literally alone in this battle because of the countless number of friends rallying me on. Its just that this is my burden to shoulder and my challenge to overcome.

Many of you friends ask if you can help me in anyway. I appreciate it and its not that I am too shy to ask for help. Its just that most of the times, I have to do the chores myself. Jase wants mummy to sleep with him and Charmaine wants mummy to sleep with her. Even though now I am sleeping between the kids, both of them would want me to face them. I wish I can clone myself.

To cut the long story short, I am very exhausted right now. I barely have any energy to reply any of the text messages friends sent. And when I do reply, I know I probably sound very curt. Please forgive me for my non response and please forgive me for not being able to stay in touch. I dont exactly wish to say much most of the times too.

Just a little plea and gentle reminder to the friends who do visit Charmaine, please refrain from visiting her if you are feeling slight unwell or has family members who are sick at home. Just like DBS CEO Richard Stanley, Charmaine is very prone to infections and the risk of cancer patients dying from infections is very high. As such, I seek your kind understanding. Also, if you do visit, please remember to wash your hands cleanly before getting near Charmaine. As Jase and Charmaine are very close to each other, Jase also cannot afford to get sick. So please kindly practise extra caution with Jase too. This would apply to anyone visiting any other cancer patients.

I know I probably sound like a paronoid mummy now. Please bear with me. Friends who have known me before this episode would know that I never believe in such extreme cleanliness because I grow up in the era where "we eat dirty and we still grow up fine". Hence, I am also trying to deal with changing my own beliefs when it comes to bringing up kids, especially cleanliness. I wash my hands numerous times a day to a point where I am getting extreme dry skin and scalding myself countless times a day while washing all the utensils in hot water.

Thank you for listening to me whine. I would like to end by saying that no matter how tough it is, I am still ploughing on and I am not giving up.

Saturday, April 11, 2009

Before this, cyn mummy was coaxing the determined charmaine to take her medicine. We all tried coaxing but to no avail too. A while later, charmaine took the syringe herself and we were all so excited. Luckily charlene's fast fingers quickly whipped out my camera and started recording.

Charmaine would be undergoing the 3rd chemo session this week if everything goes according to schedule.

Friday, April 3, 2009

Charmaine is currently warded at NUH for her persistent fever.

Charlene and I were supposed to meet up in the evening for a play session with the kids at Cynthia's house. However, Charmaine had to be warded this morning on Thursday morning as her fever had hit 38 degree.

Recently, there is another setback for Cynthia which I feel is not convenient to talk about over here. To look on the bright side, Charmaine was so bubbly and lively just now. Looking at all the positive energy emanating from her, one could not believe she is sick.

Will be back to update again with photos. =)

~*~*~*~*~*~*~*~

Charmaine assumed many roles that day.

She was a little doctor. She knew how to take her own temperature and read the values out.

Charmaine was a professional little photographer!

These shots were taken by her:

Little Charmaine wasn't just a photographer, she was a director that day. She was suggesting poses for us before she snapped each shot.

After a while, Cynthia's family arrived and both kor kor and mei mei were sooooo sweet to each other!

We spent quite some time "playing" with stickers.

They were really generous sharing their stickers with everyone. However, they were so notti and cheeky to always bully the ever nice Charlene jie jie by giving all the torn stickers to her. Haha...

After many rounds of sticker pasting, everyone ended up wth Dora clothes. Cyn mummy's plain blue T looks just like a T with Dora prints.

There we were trying to imitate each other's pose. It was more of me imitating her actually.

"Yes. Charmaine is very lively and energetic as ever. As usual, she will have all the energy to 'cut' me =P

Wasn't able to play with Char and Jase today as was busying fixing up some DIY 'shelves' for them to store their toys. Not sure what that should be called.

Jase and Char were very nice. Both wanted to help and eager to help. Just that we were worried that we may hurt them in the process of fixing up the 'shelves'. Nevertheless, they played a part by helping us to hold the plank of wood, pass us the screws etc. Oh ya, they are so sweet that thy will ask me and their mummy to be careful and not get hit by the plank of woods. How sweet of them =)

Also, suprisingly, Charmaine wanted to sit on my lap and we took a photo together!!! Im so happy. Usually she dont even let me take a photo of her, not to even mention to take a photo with me!!"